Dr. Scot Lewey

Dr. Scot Lewey is a digestive disease specialist doctor (board certified gastroenterologist) whose medical practice focuses on digestive and food related illness & research. He has published numerous articles, many of which are featured in popular Celiac newsletters. Not only is he a medical expert on food allergy & intolerance but he is also personally sensitive to gluten & dairy, & his wife has Celiac disease. They live gluten free in Colorado.

Celiac.com 01/30/2007 - Gluten intolerance resulting
in symptoms and illness similar to celiac disease without meeting diagnostic
criteria for celiac disease is a new concept. This concept of non-celiac
gluten sensitivity (NCGS) or gluten related disease (GRD) may be a new
paradigm that is hard for some people to swallow, especially when I suggest
that it affects as much as 10% to 30% of the population.

Gluten ingestion is an avoidable, treatable, and reversible
cause of illness in many people. It is contributing to the rising epidemic
of autoimmune diseases. Many resist these concepts finding them either
unbelievable, unacceptable or both. I believe that their rejection is
neither rational nor helpful. It may be reasonable to reject them for
cultural or financial reasons though I don’t believe they can legitimately
be rejected based on scientific grounds or experience.

Celiac disease is not rare. Celiac disease affects 1
in 100 people in the world. Yet the diagnosis of celiac disease is still
frequently missed and/or delayed.

It is a common disease that is often undiagnosed or misdiagnosed.
It may even be the most common autoimmune disorder. Though the risk is
largely genetic, it is preventable by simply avoiding gluten. Autoimmune
diseases associated with celiac disease may also be preventable by avoiding
gluten.

When I was in medical school over twenty-five years ago,
I was taught that celiac disease was rare. In residency we were shown
photos of short, emaciated children with skinny limbs and pot-bellies.
We were told that their medical history included symptoms of profuse,
watery, floating, foul-smelling diarrhea, and iron deficiency anemia.
The picture and story was burned into the hard drive of our brains, not
necessarily because anyone believed we would see someone with celiac disease
in our practice, but because celiac disease was considered rare and odd
enough that it was a favorite board examination question. That image and
story remains in the mind of most physicians, preventing them from seeing
celiac disease in a much broader light.

When I entered subspecialty training in gastroenterology,
13 years ago, specific blood tests for celiac disease were available but
still new. We were beginning to order the blood test when classic symptoms
of celiac disease were seen without an identifiable cause, or if we happened
to sample the small intestine during endoscopy and classic Sprue changes
were seen in the intestinalbiopsy. celiac disease was still considered
somewhat rare. We did not routinely biopsy the small intestine to screen
for celiac disease, and genetic tests were not yet available.

It wasn’t until 2003 that Fasano’s landmark
article reported Celiac disease affected 1 in 133 people in the U.S. Only
recently has it been accepted that family members of people with celiac
disease, those with digestive symptoms, osteoporosis, anemia, and certain
neurological, skin or autoimmune disorders constitute high risk groups
for celiac disease. They have an even higher risk of between 2% to 5%,
though most physicians are unaware of these statistics. Every week, using
the strict diagnostic criteria, I confirm 2-3 new cases of celiac disease.
I also see 5-10 established celiac disease patients. However, for every
identified celiac disease patient there are 3-10 who have clinical histories
consistent with celiac disease, but who fail to meet the diagnostic criteria.
Yet they respond to a gluten-free diet. Many have suggestive blood test
results, biopsies and or gene patterns but some do not.

More than 90% of people proven to have celiac disease
carry one or both of two white blood cell protein patterns or human leukocyteantigen (HLA) patterns HLA DQ2 and/or DQ8. However, so do 35-45% of the
general U.S. population, especially those of Northern European ancestry.
Yet celiac disease is present in only 1% of the same population. DQ2 or
DQ8 are considered by some experts to be necessary though not sufficient
to develop celiac disease. However, celiac disease without those two genes
has been reported.
Other gluten related diseases including dermatitis herpetiformis, the
neurological conditions of ataxia and peripheral neuropathy, and microscopic
colitis have been described in DQ2 and DQ8 negative individuals. The DQ
genetic patterns found in other gluten related diseases and associated
with elevated stoolantibody tests indicate that many more people are
genetically at risk for gluten sensitivity. Furthermore, the response
of numerous symptoms to gluten-free diet is not limited to people who
are DQ2 or DQ8 positive.

Most celiac experts agree upon and feel comfortable advising
people who meet the strict criteria for the diagnosis of celiac disease:
they need to follow a life-long gluten-free diet. Controversy and confusion
arises when the strict criteria are not met, yet either patient and/or
doctor believe that gluten is the cause of their symptoms and illness.

Many alternative practitioners advise wheat-free, yeast-free
diets, which are frequently met with favorable response to what is really
a form of gluten-free diet. Similarly, the popularity and successes of
low carbohydrate diets require adherence to a diet that has been credited
with improvement of headaches, fatigue, bloating, musculoskeletal aches,
and an increased general sense of well-being that is self-reported by
many dieters. I believe this is because of the low gluten content. Gluten
avoidance is clearly associated with improvement of many intestinal and
extra-intestinal symptoms such as those listed above.

Many also stumble onto this association after initiating
a gluten-free diet or wheat-free diet on the advice of friends or family
members; dieticians, nutritionists, alternative or complementary practitioners;
or after reading an article on the Internet.

Within the medical community, there seems to be an irrational
resistance to a more widespread recommendation for gluten avoidance. Physicians
who maintain that those who fail to meet strict criteria for diagnosis
of celiac disease should not be told they have to follow a gluten-free
diet will often acknowledge that many of these patients respond favorably
to a gluten-free diet. Some, however, continue to insist that a gluten-free
diet trial is unnecessary, unduly burdensome, or not scientifically proven
to benefit those who do not have celiac disease. This position is taken
despite the absence of evidence that a gluten-free diet is unhealthy or
dangerous and much evidence supporting it as a healthy diet.

Those of us who have observed dramatic improvements,
both personally and professionally, find such resistance to recommending
a gluten-free diet to a broader group of people difficult to understand.
Considering the potential dangers and limited benefits of the medications
that we, as doctors, prescribe to patients for various symptoms, it really
seems absurd to reject dietary treatments. Yet, it does not seem to cross
most doctors’ minds to suggest something as safe and healthy as
a gluten-free diet, let alone to, at least, test for celiac disease.

My personal journey into gluten related illness began
when my physician wife was diagnosed with celiac disease. I had mentioned
to her numerous times over several years that I thought she should be
tested for celiac disease. After her second pregnancy she became progressively
more ill experiencing, for the first time in her life, diarrhea, fatigue,
and chronic neuropathy. An upper endoscopy revealed classic endoscopic
findings. Celiac disease blood tests were elevated, and genetic testing
confirmed she was DQ2 positive. This forever changed our lives and my
practice. But the story doesn’t end there.

Having diagnosed myself with irritable bowel syndrome
(IBS) and lactose intolerance in medical school, I had not considered
gluten as a possible cause of my symptoms until my wife turned the table
on me and said I should also be tested for celiac disease. My blood tests
were not elevated but I was confirmed to also be DQ2 positive.

Having observed a good response to gluten-free diet in
a few of my patients who had elevated stool gliadin antibody levels, I
looked critically at the research behind this testing and spoke with Dr.
Ken Fine before paying to have my entire family tested through Enterolab.
Both my gliadin and tTG antibodies were elevated and I responded well
to a gluten-free diet. I began recommending stool antibody and DQ genetic
screening to patients who did not meet the strict criteria for celiac
disease but appeared to have symptoms suggestive of gluten sensitivity.
Contrary to some critics’ claims about the stool antibody tests,
there are many people who do not have elevated levels. Almost everyone
I have seen with elevated levels has noted improvement with gluten-free
diet, including myself.

Not only did my “IBS” symptoms resolve and
lactose tolerance dramatically improve, but my eyes were further opened
to the spectrum of gluten related illness or symptoms. I was already aggressively
looking for celiac disease in my patients but I began considering non-celiac
gluten sensitivity (NCGS) or gluten related diseases (GRD) in all my patients.
What I have found is that gluten is an extremely common but frequently
missed cause of intestinal and non-intestinal symptoms. Dramatic improvements
in symptoms and health can be observed in patients who try a gluten-free
diet.

Since only a fraction of DQ2 or DQ8 positive individuals
have or will eventually get celiac disease, does that mean gluten is safe
to eat if you have those gene patterns? Even if you do not get celiac
disease, does continuing to eat gluten put you at risk for other autoimmune
diseases, especially ones linked to the high risk gene patterns? Why do
some people with these patterns get celiac disease but most do not? Do
some who do not have celiac disease experience symptoms from gluten that
would improve with gluten-free diet? These questions need to be answered
so that people can decide whether they want to risk that gluten is causing
them to be ill, or is increasing their risk of celiac disease or other
autoimmune diseases.

Added to my gluten-free diet, a daily diet of scientific
articles on celiac and gluten related disease has revealed that there
are many clues in the literature and research indicating the existence
of non-celiac gluten sensitivity or a need to broaden our definition of
celiac disease. Dr. Hadjivassiliou has called for a new paradigm. He advocates
that we start thinking of gluten sensitivity not as an intestinal disease
but a spectrum of multiple organ, gluten-related diseases. Mary Schluckebier,
director of CSA, asks that physicians interested in this area work on
forming and agreeing on new definitions for gluten related illness while
pushing for more research and cooperation between medical researchers,
food and agricultural scientists, dieticians, and food manufacturers.

Only those who look for NCGS and advise a gluten-free
diet to those not meeting the strict criteria for celiac disease, are
going to see the larger group of people who have a favorable response
to a broader application of the gluten-free diet without further research.
Those of us who are personally affected by gluten sensitivity or professionally
involved in treating individuals with adverse reactions to gluten (or
both) should support the research into the broader problem of gluten related
illness. I believe that NCGS is real and will be validated in studies.
Are you open to this concept and are you willing support more research
in this area?

Dr. Scot Lewey is a physician who is specialty trained
and board certified in the field of gastroenterology (diseases of the
digestive system) who practices his specialty in Colorado. He is the physician
advisor to the local celiac Sprue support group and is a published author
and researcher who is developing a web based educational program for people
suffering from food intolerances, www.thefooddoc.com

In 1991 I was very ill and after many rounds with doctors and no help I found one who suggested a diagnostic diet. Within a week I was so much better, but it took ages to rehabilitate my whole digestive system. The one thing I have avoided since was gluten and my life has returned to being healthy. I formed the opinion that I was celiac, but as no doctor considered this I was not tested and therefore not diagnosed. Later I have been told to eat gluten so I can have the tests. I say I haven't got that time to waste being sick. I know I get sick when eating it.

Then, I had a daughter and totally breast fed her for 6 months. Then, she had very light gluten load, but when she began preschool this increased with lunches etc., as I was going on the advice not to exclude it as it was vital for a healthy diet. But she developed all the symptoms of Celiac. The blood tests were negative. I wrote to a pediatric gastroenterologist in a major teaching hospital and outlined the symptoms. He did not even need a consultation just booked her in for the biopsy. The results were negative. No evidence of celiac disease. That left me in such a difficult place as all of her symptoms resolved by staying off gluten, but I had no other diagnosis. Her father (separated) and family thinks I am making it all up and sometimes fed her gluten, but she is clever (now 8 year old) and from the beginning understood the diet and enforces it. So she is a healthy child not eating gluten, with no diagnosis. But all of this has led me to think along the lines that this article suggests. I knew 17 years ago that the medical fraternity had it very underestimated.

Good for you on following your mom instincts! A mother truly knows her child best.

I too am a Non-Celiac, Gluten Sensitive individual. My nutritionist confirmed it with a genetic test that involved using a cheek swab sample. Very easy to do. I had 2 copies of the HLA-DQ gene, perhaps this test could help more people who are perplexed by the traditional, negative celiac tests.

I'm the same way. Celiac tests are negative, but I have almost all the symptoms. The only thing that gets me well again is avoiding gluten. So I live as if the test results were positive, and feel like a healthy person for it.Wish you and your little one well.

Excellent article, well-written and thought-provoking. I have long believed there is non-celiac gluten sensitivity but am unable to convince many (any?) physicians whose patients I counsel. I'm copying this article to use as a convincing reference tool!

Excellent article. I was gluten free for two months before having the blood tests for the antibodies. They were present but not high enough to be called celiac disease. I had the fecal tests and gene test done through Dr. Fine's Enterolab. I have both the DQ2 and DQ8 genes plus the antibody level was high and this was 4 months after going gluten free. Also found out that i was casein intolerant, What a lifestyle change.I started looking at all this because there were 9 children in our family and so many diseases and cancers. Now that I am getting on the right train and the right track I am having difficult convincing my siblings and family to be tested.I have pulmonary hypertension secondary to scleroderma, osteopenia, Vit D defenciency, iron deficiency, my hair was falling out (that has improved since going gluten free), constipation, reflux, aches and pines all over the place--muscles and joints. It took 57 years to get this way and I know it will take time to undo some of the problems. Maybe this will help my family understand what we are up against.Cindy, Lewisville, NCPS I had this bumpy itchy rash as a kid and off an on as an adult. It was diagnosed from contact dermatitis, to ringworm to neuro dermatitis. I now know what it was. We have to be our own medical advocates. If what you are told does not make sense do not just accept the answer. Get another opinion.

The standard advice is NOT to go gluten-free before taking the blood test for celiac disease. I've read that you should eat one to four slices of wheat bread per day for four to six weeks prior to taking the test. Failure to do so can result in a false negative, which may be what happened in Cindy's case.

If you're not consuming wheat before the test, you may falsely test as negative.

Thank you, thank you. I have told people that I must be a celiac in remission. Celiacs look at me and give me the uh uh, she is in denial look. I was raised by a diagnosed celiac (blood test and biopsy after about 15 years of symptoms) and had symptoms myself for about 2 years prior to my first pregnancy when my symptoms as well as my milk intolerance vanished. GO FIGURE. I have an underground undiagnosed celiac child who had a celiac blood panel done by the family doctor. He was not sure if she has it or not. This celiac panel caused us to not be able to purchase health insurance while we were self employed. We are now doing our very best to bury this in her history and pray that this panel never raises it's head again to haunt us (We saw this doctor only a few times and then he moved his practice). I ponder my time of symptoms and scratch my head. I count myself blessed by Heaven. How could I have done the work in my home with my 7 children and battled symptoms myself too. I would have done it, but it would have been hard. NCGS what a thought... Or is it remission? I guess it does not really matter right now, but I hope for better quality of life for Celiacs and less pain and anguish from insurance companies. I know insurance companies are trying to stay in business, but refusing insurance to people with such a common disease? Awareness is the key.

I have been suffering from IBS after my diagnosis of acute transverse myelitis. I have been to gastro specialists who did not give me any solution for this symptom. I feel like a Goodyear blimp with a block of cement in my stomach. I will pass this article to my primary doctor. I need relief on top of my 24/7 neurological pains. Thanks.

I loved this article! It has been so hard to get help for our family! A year ago my (then) 3 year old daughter was diagnosed with wheat intolerance as well as some other food intolerances. She always ate tons of food but you could count her ribs front and back. Our GP said that she was 'just the tall &amp; skinny type'. But, she also NEVER had a firm stool. After our family went wheat-free, then gluten-free and she gained 4 lbs in 2 months! The funny thing is that my husband who has had a diagnosis of IBS and reflux for years had his symptoms disappear! We are not going to try the battery of tests for celiac and related issues.

I've been gluten free for only 2 weeks and have seen amazing results that I didn't think were possible from any diet, drug, surgery, or treatment. I started the diet immediately after the blood-draw and have since had the results come back negative for Celiac Disease. The tests seem a mere formality---the results of a gluten-free diet speak quite loudly. My most bothersome symptoms included fatigue, flu-like pain, and myoclonic jerks. These symptoms are now greatly reduced, despite hearing that neurological symptoms like myoclonus (involuntary, uncontrollable large muscle jerks) are not likely to reverse with a gluten-free diet. No MRI, EMG, bloodwork, doctor or specialist (including my excellent neurologist and rheumatologist) could pinpoint the cause of the myoclonus. Who would have guessed it was in response to toxic gluten? I no longer feel as if I'm dying from a long drawn-out terminal illness, and I actually feel energized after eating---something I've never experienced in all my 38 years. A note to the wise: Even if you test negative for celiac disease, try a strict gluten-free diet for a couple months. There was seriously a time when I thought a wheelchair might be in my future because of fatigue and weakness from what was diagnosed as Fibromyalgia. I now have my life back. I cannot stress enough how amazing this change has been. Don't hold out for a positive celiac test. NCGS should be considered.

You are not alone!! I was diagnosed at age 25 with Fibromyalgia. I couldn't believe that I would feel "that" way for the rest of my life. I went from a college athlete to canceling dates with my husband because of how ill I felt. I went gluten free (no tests, just something I chose to do) about 2 months after the diagnosis and I have been Gluten Free for 9-10 months and have NO fibro symptoms to date. I hope that you continue to have success on your Gluten-Free journey!

Thank you so much I to am diagnosed with fibro and convinced that no help will come from doctors started a gluten free diet 4 days now in to the diet my fatigue is going slowly down.Still wait to have improvement with gas, but I truly start to believe in new life thank you for your comment.

Hi Kim, I know you posted this years ago but I hope you will still respond. I've had a positive blood test for celiac after years of suffering. I've also had "attacks" of myoclonic jerking which was first treated as epilepsy. I've spent years going through the medical system, only to be told by a patronizing neurologist to go see a therapist to find out what is "sub-consciously" causing these jerking episodes. Reading your post has given me hope! I will go see a celiac specialist ASAP. Who is your specialist? Do celiac specialists find myoclonic jerking as a common side affect of celiac.

This article is very well written and was so helpful to my family. My son is two and half and has had a gritty very smelly diarrhea, slow growth and constant hunger for two years. I kept a food journal on him for months at a time and it seems to be related to gluten intake. We have him on about a 90% gluten free diet despite the fact that all of his tests for celiac disease came out negative. The gluten free diet has helped so much. Since he hasn't been diagnosed with celiac and the gastroenterologist won't recommend a gluten free diet we can't get the extra medical (dietitian / nutritionist) support to help us figure the whole diet out though.

What interests me is that I know of so many people now (including myself) who have gluten allergies but never had them 10, 20, 30 years ago! There seems to be an explosion of NCGS. My friend's little boy was diagnosed as celiac twenty years ago and there were two or three products available. Now there are hundreds. Even a junk food restaurant had a product 'gluten free'.

Wow, I am right with Kim. I was diagnosed with Fibromyalgia about a year ago and thought it was the PERFECT fit. However, at 25, I couldn't begin to think that this is how the rest of my life would be. SO, I began searching...I have been on the gluten free diet for about 9-10 months and can't believe the transformation. I now believe that others in my family could very well respond to a GF diet, but I have to convince them, just like this doctor is having to convince other doctors. There is such a thing as non-celiac gluten sensitivity. I have been battling for this "diagnosis" for over 15 years. 3 surgeries and a near lupus diagnosis at 12, makes me relieved to read articles like this. I am not alone and I am not making this stuff up.

I stumbled upon gluten-free diet after being baffled by a combination of odd symptoms...irregular digestion, pain, bloating, muscle joint pain, hair falling out, fatigue, weight fluctuations and a weird tingling feeling in my fingertips. I am completely normal now after being gluten free for over a year. I am a scientist-type so It was easy for me to scrutinize everything I ate..be patient and stick with it even if it feels complicated..and don't give up if your test results are "inconclusive". If you eliminate something from your diet but don't change anything else and you feel better and stay better..that's good enough proof for now. just be aware that it is an ELIMINATION diet...and you have to be patient and stick with it.

Wow, the first time I heard of Celiac disease was when my autistic and diabetic nephew's endocrinologist recommended it for my nephew, and when he tested positive, I had my autistic son tested, and BAM!!! At 6 ft. 1, he never weighed more than 120 lbs, and looked like he suffered from starvation. I always knew he couldn't absorb nutrients from food, although he ate more than twice the normal amounts. No wonder!! Since going Gluten Free, his entire health has turned around. He's gained weight, and his gum disease has curtailed. When I first started buying him baked goodies, he'd reject everything, as you know they taste like cardboard. So, I developed a better way, and I now have a Gluten free, Flour free bakery of brownies so delicious, and so naturally made, that they taste exactly like the old flour ones.

I too came up negative on the Celiac Sprue blood panel, but I have most of the Celiac symptoms. I started suspecting Celiac disease when I went on a very restrictive low card diet to try & help my skin (I also have cystic acne). I noticed how much better I felt all around after a couple of weeks. Then I slowly started adding things back into my diet. When I got to wheat & gluten all my previous symptoms came back. Over time they even got worse, so, on my own, I went on a strictly gluten free diet and as long as I avoid it I feel "normal". Long story short, avoiding gluten has saved me from more misery and embarrassment. I'm life long gluten free from this point forward.

Like many who have posted here, I've had an array of to date undiagnosed symptoms ranging from GI to neurological (peripheral neuropathy, headaches, twitches). I've also had periodic muscle aches, joint pain, dizziness, blurred vision, and facial flushing. Several MRIs, loads of blood work, and a celiac panel and biopsy, everything has come back normal. I'm 30 and have been gluten free for two weeks and was wondering how long it typically takes to begin seeing signs of improvement?

Matthew, Have you been checked for a B12 deficiency? Most of your symptoms fit that. Celiac disease is one of the causes of a B12 deficiency. Going gluten free will allow your body to start absorbing B12 again (if that is the issue), but if you are deficient you will need extra supplementation to get you built back up.

Out of curiosity, has anyone had vitiligo (which is an auto-immune disorder) reverse when they omitted the gluten from their diet? I have some of the other symptoms also, such as the rashes and swelling of the stomach. However, I would like to know if this is linked as well.

I think one of the most difficult parts of having three children with gluten sensitivity and other food sensitivities that I still cannot figure out is that almost everyone around me acts as if I have two heads.

People don't realize that when they give my children something that contains gluten or other ingredients to which they are sensitive, my kids are going to have major problems later.

I really do not enjoy watching my child cry until 3 a.m. because someone fed my 2-year-old a graham cracker or to have to deal with my 6-year-old not wanting to go to the potty and having accidents for 2-3 days because something she ate gave her a terrible rash on her bottom. It breaks my heart when my 8-year-old comes home in tears because staff refused to heat her food the first day of school because the school instituted a new policy stating that kids who needed food to be heated had to have a doctor's note but didn't bother to communicate that to parents before school started.

Very few people would offer a diabetic child a banana split with a milkshake and say, "But look--she's enjoying it!" I would not think that a child with a severe peanut allergy would be offered a bag of peanut M&M's and then act like the parents are being overprotective if they have to give the child medication so that the child won't stop breathing. It's strange how even a pastor would say "Well, come up here before church and clean and vacuum the room yourself" rather than asking people who are watching kids in a children's area to make sure that they don't leave crackers all over the children's table and floor.

Perhaps another reason that many doctors are not particularly interested in advising people to go gluten free is that they may lose repeat patients. A physician can get a lot more money treating multiple irritable bowel symptoms. If someone who is sensitive to gluten goes gluten free, they may have a huge increase in quality of life, reduction in numerous symptoms, and a greatly decreased need to see physicians.

I do think there needs to be much improved education about gluten sensitivity, not only among health care workers but among the general public as well. It would be incredibly helpful if manufacturers of food and drugs would always label their products as either "gluten free" or "may contain gluten." I'm often shopping with three small children. It's a bit time-consuming to have to search through labels and even contact manufacturers each time I shop. I would love to see some experts really push our lawmakers with this labeling. Having to list wheat has been helpful, but just because it does not contain wheat does not mean that it doesn't contain gluten.

I truly appreciate articles like this, Dr. Lewey. Sometimes it is incredibly frustrating to live in a situation that so few even recognize, much less understand.

Great Article, I have been diagnosed celiac at 60 years of age, after years of stomach pains, bloating, reflux, fatigue and other symptoms too numerous to mention. Thank you for making us so aware of celiac disease. I was prompted to ask my doctor to do blood tests and was quite relieved to find an answer, after years of misdiagnosis. Thank you.

I love this article and it is so true. My son began to experience severe irritable bowl syndrome symptoms after being vaccinated 3 years ago. The doctors had no clue to why this was happening and I was so frustrated with them. I suspected food issues especially dairy but wasn't sure about gluten. Then I went to a naturopath for some unrelated problems and found out that I had multiple food sensitivities to gluten, dairy and others. I had both of my sons tested and they came back with the same thing. The naturopath told us that my one son with the irritable bowl syndrome had underlying allergy issues and the vaccines exacerbated the problem. Now we have eliminated all the foods that were causing problems. My son no longer has irritable bowl syndrom symptoms as long as he is careful about what he eats. I wish the rest of the medical community would get their act together and realize this is a serious problem that is not being addressed. Thanks for getting the word out with this excellent article!

It is was so wonderful to read this article. I have been tested many times over the last 30 years for coeliac disease but always come up negative. However, on top of gastric symptoms and constant fatigue I developed nerve twitches, restless leg syndrome, tingling on limbs and a head tremor. Going gluten-free has alleviated most of my symptoms. What I have been searching the net to find out is if a gluten sensitive person can eat gluten occasionally (eg. when traveling overseas when it is difficult to exclude gluten) or will there be bad gut damage all over again.

I was diagnoses to have IBS by many doctors and also lactose intolerant. I was always bloated (terribly) and tired. I thought it was stress and that it was all in my head. I almost got into a depression and my love life suffered it the most. I became lonely and sad. I started to stay home and alone. No more going out to restaurants. I search for 4 years what my problem was. I stop the gluten products 4 months ago. I have to say that i feel a lot better. Sometimes i still have some gastrointestinal disorders but they last a few days and they leave me alone. I think it's because i didn't cut all the little gluten possible. It may also be because i need time to restore my body and to be healthy again. To all the people who suffered and who are suffering of gastrointestinal problems, i say don't give up. You need courage and to always try to find what works best for you.

I am awaiting results of my Celiac Panel. But since having the test done, I have experimented on my own, and discovered that the days I went Gluten Free all day, I had no stomach issues at all. And the days I have something with Gluten, I have the burning, and gas, and nausea, horrible rumblings.

Even if my tests come back negative, I will be avoiding Gluten as much as possible from now on, but I will probably still cheat now and then. But if it ever comes to extreme discomfort, then I would probably stop all together.

I was recently diagnosed with a B12 deficiency and that is why my Endo wanted to do a Celiac Panel. Several years ago I started taking probiotics, because I too, self diagnosed myself as having IBS. The probiotics helped immensely. At some point I quit drinking milk because of what appeared (more like felt) like lactose intolerance.

Gosh after reading everyone's posts, I'm beginning to wonder if Wheat is more like a Poison than a nutritional food. What if everyone in the world went Gluten free? Would it eliminate a lot of the diseases and ailments that so many suffer from?

This page has been a great help to me. I was diagnosed with a gluten problem at a very young age. I was hospitalized twice when I was 3 years of age. My symptoms disappeared for years. I just realized that I have been having a lot of those symptoms for at least 3 years now.

I have been suffering with bloating and feeling horrible for years. I had a colonoscopy at 18 because my doctor believed I may have polyps in my intestines. Nothing. I would go days without going to the bathroom and then experience severe pain with very loose stool. I have been battling this for years now. A few years ago I was told I had IBS and then was diagnosed with Lyme disease and shortly there after I got mono at 37. Now I have Epstein Barr Syndrome. And Just recently....... Shingles. I am always so tired and cranky. Last year I went on a small diet to loose a few lbs. for vacation. On this diet I cut out bread and gluten. I almost immediately felt better and lost a few! Since, I have resumed to eating gluten again and can not believe the difference In how "Sickly" I am. Today I was tested for Celiac. I am not waiting for the test to show up negative........ I know what I need to do. Hence, my trip to Shop Rite's Gluten free isle.

Because of this article and all the posts, I know I wasn't crazy. Thank you.

I was thinking of something. Don't we have a lot of genetic manipulation of our grain and corn products to grow them bigger and stronger supposedly? Maybe that is the main cause of the gluten sensitivity, that it isn't natural gluten, but more a manipulated gluten. An interesting thought, I am not a scientist, but its an interesting thought.

This article answers makes so much sense of the symptoms I have had most of my life - I am 65 and have tested negative for Celiac - however, my youngest daughter is positive for celiac and my eldest daughter's son has dermatitis herpetiformis. In addition to the usual symptoms, the peripheral neuropathy I have had in my feet for the past 35 years now makes sense - I am not diabetic either. I have been gluten free for the past 6 months and most of my symptoms went away. In fact, when my daughter who had just been diagnosed with CE came for a visit in December, we all ate gluten-free to show support, and that is when my own symptoms started disappearing! After 2 bouts of blood tests, still negative for celiac, so must be NCGS - and gluten free the rest of my life. Thanks so much for making me feel like I am not losing my mind, too.

Excellent article! I recently tested borderline for anti-tissue transglutaminase, and my doctor wants me to have a colon biopsy (celiac is in my family; my father had a severe undiagnosed case for decades). Whether the test comes back positive or not is probably irrelevant though, as celiac is simply one possible manifestation of gluten intolerance, not the only---or even necessarily the most common or serious---one. Now if I can just convince Dad that a white flour sugar cookie a few times a week is no little thing, even if he only (thinks he) feels a "little" sick afterwards.

Thank God for doctors such as this one! Maybe the new crop of gastroenterologists coming into the profession will be able to wake up the rest of the doctors in their discipline to this rampant problem. Most gastroenterologists that my family and friends have visited have been completely useless in diagnosing their gluten-related digestive issues. It's shocking how behind the curve most of these specialists are. Think of the years and years of needless suffering (not to mention the amount of money wasted on drug-based approaches) people are enduring when we have to do is change our diet! Thanks again for the brilliantly written and thoroughly researched article.

Oh, This is so comforting to know that there are others who have had these problems with food and felt so alone as doctors brushed off the connection with foods and problems like neuropathy, irritable bowel, migraines, and mood changes, etc. As a result of more than 40 years of feeling like every day is a scientific experiment, I feel better at 67 than I did 50 years ago! Keep those food diaries and include reactions with the nervous system: panic attacks, brain fog, itching, numbness, migraines. Those reactions are almost never considered by doctors to have a connection with food. If the patient does not break out in a rash or have hay fever, many doctors will not consider foods. Thankfully, I had a doctor who had problems himself, and was able to help me, 30 years ago. He had worked with Theron Randolph, a clinical ecologist and had been helped. Thank you for helping me remember some of the misery I experienced years ago, and giving me motivation to stay on the diet that I know has helped me. After being very careful for weeks and/or months, I can tolerate some wheat, milk, even eggs. Then it is difficult to avoid them. I feel like I am addicted. It takes a week or more to get back on the right track again and feel better. I had been off my diet and I was eating everything when I had blood tests this summer. My liver enzymes were elevated. I was very careful for one month, and the enzymes were tested again with normal results. I have been on and off the diet hundreds of times in the last 40 years, and still I have trouble believing that the bowl of ice cream or the delicious sandwich will cause the muscle and joint pain or the headaches or the anxious feelings or the depression. Thank you all for helping me feel that my connections with physical and emotional pain and the foods I eat are valid. Thank you for the article and the comments.

This doctor has legitimized what we already felt, and intrinsically knew: just because the tests come back negative does not mean we are delusional or that we should eat wheat/gluten.

I have been suffering from episodic depression, PMS, cystic acne, chronic yeast infections every month, and now they just diagnosed me with a GI motility disorder (blanket term for we don't what's wrong with you).

They thought I had an ulcer. So, I stopped drinking alcohol, then soda, then fatty foods, and in one month I had cut everything out except for Carr's Water Crackers, Gatorade & Ensure. Everything else caused me to have severe gas, bloating, crippling abdominal pain, diarrhea, constipation, blood in my stools, heart burn, nausea.

They then ordered an endoscopy & colonoscopy: both came back negative. They took biopsies & I am waiting on the results, but I won't be surprised if they come back negative too.

At this point my physician's have silently lumped me with the "psych cases." It has cost me over $5,000 in tests & medical bills, I had to withdraw from college this semester, and I can't work.

Right, I made it all up in my head so I can sabotage my life with an imaginary disease & pay money for tests that I don't have while going into debt over medical bills.

Thank you Dr. Scot Lewey, for vindicating so many of us who are ignored or dismissed as "psych" cases by physicians who are ignorant to NCGS and it's relatives that are not as widely recognized by the medical community.

I am so glad I found this article. I am cancelling my endoscopy this week. After 20 years of gastro symptoms, including the last 7 years of "daily diarrhea" I knew within days of going gluten-free that I had found the culprit. I was a whole wheat advocate for over 20 yrs. thinking I was a really healthy eater. Who knew that I was actually poisoning my body and not receiving the full benefit of all of the other heathy foods I was so proudly eating!!! I just thought this was normal for a high fiber eater like me and I should avoid onions and garlic. My symptoms were GONE WITHIN DAYS and after 2 months of GF I decided to test the waters and sure enough the amount of diarrhea/gas/bloating/acid relux directly corelated with the amount of gluten I consumed. That is the only test I need. Now I look at bread and pasta and anything else with gluten in it and I just have no desire for it. It's just not worth it and there are so many gluten free alternatives now it's just not that big of a deal. I do miss a good flat bread pizza though I have to say. That would be my only cheat item that might be worth the stomach ache, etc. but I'm determined to find an alternative recipe! I would say to anyone out there who is dealing with puzzling symptoms that have the doctors scratching their heads, go gluten free for a couple of weeks and just see what happens. I would certainly do that before I tried medications that have who knows what kind of side effects. What do you have to loose???

Thank you so much for sharing this information. I've been suffering for most of my life with various symptoms that only worsened. I attributed it to anything but the food. I even avoided eating at work as I felt better and had more energy when I wasn't eating. I also avoided the coffee vending machine because it made me feel bad. 2 months ago I became a vegan by choice and as consequence, most of the foods I was buying from the store were eliminated and I had a month of a diet with high-fibre rice, quinoa, beans, vegetables, nuts, seeds and fruits. I felt excellent and very high in energy, and my bowel movements were regular, no pain, lost 2 kg from water retention, basically I felt reborn. However, I continued having severe reactions to the tea water from the vending machine at work, which I attributed to traces of milk, thus I avoided it. It is just recently that I discovered that vending machines for coffee and hot chocolate contained gluten. Then, two weeks ago I went to a business trip and instructed the hotel staff to make sure my food was egg, milk, soy free (as I mistakenly suspected these foods to be the cause of my problems). Even though the food was free of those, the second day I suddenly felt very bad, bloated, depressed severely, even had problems talking, moving my lips, difficulty to focus, I couldn't do any work... Severe anger, anxiety, irritability followed the day after and it continued for almost a week. That's when I suspected gluten, because unlike my home diet that excludes bread, I had bread at the hotel... I also connected the dots with other similar episodes...So I got tested for food allergies and they came back negative. The doctor just dismissed my symptoms and told me to come back in a few months if I lose weight??? I was angry, but I knew there was a reason for my issues and I was certain it was gluten. I have been gluten free for a week now and my symptoms are getting slowly better, both the gastrointestinal and the mental ones... So, I am determined to see this through and get better! Thank you so much for acknowledging this issue! I hope we can spread the word and help many more people overcome their problems associated with gluten even if they aren't aware of it!

I am 72 and have not been tested. I am being tested tomorrow. I know I am sensitive to gluten as I was put on a diet in the navy and found out it was the Atkins diet back in 1977. I lost 100 lbs and felt great. I didn't think much about it until I gained back 80 lbs and felt so depressed, tired and hurt all over. I went back on the diet and most of the symptoms disappeared and I lost another 100 lbs and I went back to a normal diet. After a few months I began to feel bad and I had tests done for gull stones, upper & lower GI and a lot more tests. I had bad headaches, bloating , skin rashes , so tired at times I felt like just giving up--bad indigestion, and my personality changed from happy to going to silent and sullen. A friend said have you been tested for celiac and and I decided I would try a non-celiac diet and I have improved some but it hasn't been long enough. More tests tomorrow. Symptoms include bloating, gas, swelling legs, eyes itching, headaches, and now it has become awful itching all over, and I have trouble breathing at night (wheezing). I think I should get tested!

Thank you for setting my mind at ease - even if I am not diagnosed coeliac (testing in progress) at least I know that I am among others who understand that what I am experiencing is as real as those who have the coeliac diagnosis.

Thank you very much for this information. I was looking for a answer to my symptoms, but the celiac test were negative, but the symptoms appeared again every time I ate gluten. I had never heard before about non celiac gluten sensitivity. This text puts light in my research. I hope more doctors heard about this, it would be very helpful because every time I go to the digestive doctor he encourages me to eat wheat flour (bread, pasta...) with the consequent digestive problems.

The postings here describe very well what I have experienced. Over a period of many years I felt my health going gradually downhill. Cronic candida infections, anemia, joint pains, brain fog (this is the worst and most debilitating symptom, I think), tinnitus, myoclonus, severe skin rash (seborrheic dermatitis), skin infections, gingvitis, unusual headaches ("exploding head syndrom"), RLS, mild depression, bloating, tiredness, other neurological problems. Testet negative on Coeliac disease, with some inflammation in the guts though. The hospital luckily didn't ignore my complaints, but recommended gluten free, as the gastroenterologist told there are many other proteins in wheat, that could be problematic, but which are not well researched. Tried a urine test from a lab in Norway (Neurozym), which showed elevated levels of gluten peptides, which is thought to be able to create a host of problems in sensitive subject. Glutenfree diet was again suggested. And it has helped immensely, most symptoms have disappeared, I am getting my life back. But I must warn against unnecessary provocations with wheat/gluten or taking breaks from the diet, if you have already experienced positive effect from a gluten free diet. I was at first uncertain if the improvement was a coincidence, so I provoked. And I also have had to drop the diet before testings a coupple of times. I have experienced, that each times I have dropped the diet for a period, it has taken longer and longer to get well afterwards. The last time I made a provocation, it has taken more than a year on glutenfree to recover from it. The symptoms have improved a lot, but are not all gone. And the first times I went glutenfree, the symptoms quickly improved on ordinary glutenfree diet. The last times I have provoked, I have had to go absolutely wheat free afterwards. This means NO ordinary gluten free products, as these are often made from wheat starch. All ingredients lists must be studied carefully, as wheat is found in extremely many hidden forms. Even in vitamins (cellulose, glycerol etc.) and medicines, and this has now become a problem for me. So DO NOT STRAY FROM YOUR DIET, unless you are absolutely forced to do it. It will possibly aggravate your condition permanently, and you will regret it.

My wife and I have problems with gluten. We also have to avoid MSG in all of its 20 different forms, artificial sweeteners, processed sugar, processed salt, milk and dairy products, and meat from animals that have been fed ractopamine or treated with ivomec.

My 20 year old son is skinny, has floating stools or explosive diarrhoea, tired and low motivation all the time, blood just came back 'no celiac' but iron deficient anemia. He is a massive meat eater and eats very well tonnes of grains/mushrooms/bread etc. Why b12 deficient and why iron deficient? I was hoping it would be celiac but its not. Not sure where to go now. We all have celiac genes but test negative to celiac panel.

Is there connection between NCGS and diabetes? Or NCGS and thyroidism?

I've been gluten-free for three days and feel great. My main food source has been bread my whole life. Recently, I had to reduce bread for dieting purposes and noticed that I felt much better. Then I went off the diet and started eating more bread again and experienced bloating, gas, cramps, fatigue and irritability. I decided to stop eating bread three days and have not had any of these symptoms. I did have muesli one day and had terrible cramps and gas afterward.

I wonder if I have been gluten intolerant for years and did not know it. I was also diagnosed with type two diabetes almost two years ago (along with hypothyroidism which has now resolved and a lumbar herniated disc). Diabetes is also considered an immune system related disease by some doctors. There is also book called Wheat Belly that says that wheat causes fat around the stomach. Fat in the stomach area is a risk factor for type two diabetes because it increases insulin resistance.